Eighteen-month-old Mykola clutched his mother’s finger as he toddled up the hallway of the national children’s hospital in Kyiv, his still-unsteady legs eager to keep up with his desire to walk.
Mykola has spent the entirety of his short life in the hospital. His cancer was diagnosed at birth, just a month before Russian forces invaded Ukraine.
“It’s like you have two wars to fight,” said his mother, Anna Kolesnikova. “Two wars in your life: one is to save your child’s life, and the other war is for your country.”
Across Ukraine, families of children with cancer are facing the dual agonies of life-threatening illness and a country engulfed by war. For many, the Russian invasion has meant displacement from their homes, fear of airstrikes and separation from loved ones, including family members serving in the military.
But despite the new hardships, the conflict has also contributed to development in Ukrainian pediatric oncology, experts say, thanks to greater cooperation with international partners at this moment of crisis.
Still, for families like the Kolesnikovs, the war has only compounded their pain.
Mykola was born in Kherson in January 2022 with a malignant tumor that distorted his face and neck and left him with just one functioning eye. He was sent to Ohmatdyt Children’s Hospital in Kyiv almost immediately for chemotherapy and surgery.
He and his mother spent weeks sheltering in the hospital’s basement so that Mykola could continue treatment even as Kyiv came under attack.
Their hometown in the Kherson region of southern Ukraine was soon seized by Russian forces and remains under occupation. Kolesnikova, 32, has stayed in Kyiv with Mykola, while her husband, her older son and her parents remain on the other side of the front lines, which can seem like the other side of the world.
“I am separated from my family,” she said. “And I am constantly worried for my kid’s life and for the lives of my parents and my other son.”
She feared the worst when the Nova Kakhovka dam was destroyed last month, flooding part of the Kherson region, but her family was unharmed.
At the start of the war, many children with cancer were hastily evacuated to other European nations, or farther afield. The evacuations, coordinated with SAFER Ukraine in partnership with St. Jude Global, ensured their treatment could continue uninterrupted.
“We had a lot of attention to save this big, vulnerable group of children,” said Dr. Roman Kizyma, a pediatric oncologist and the acting director of Western Ukrainian Specialized Children’s Medical Center.
Since then, Ukraine’s approach to pediatric cancer care has shifted, said Kizyma, 39. Starting last summer, the focus has been on capacity-building within the country. While some children with complex needs are still sent abroad, most now remain in Ukraine.
With new coordination with international partners, growing links with European hospitals, new training opportunities, and more experts providing aid in the country, Kizyma said he hoped to see pediatric oncology strengthened in Ukraine.
“I think that the level is going up, and maybe it will be even higher,” as a result of the war, he said, pointing to more specialized treatments in regional hospitals since the war began.
Many childhood cancers are treatable, but the prospects depend on where a child receives care. In the wealthiest countries, with greater access to treatments and medicines, more than 80% of children with cancer survive at least five years. In poor and middle-income countries, the rates can be lower than 30%, according to the World Health Organization.
Yulia Nogovitsyna, the program director for Tabletochki, the leading Ukrainian pediatric cancer charity, said that they estimate that around 60% of children in the country are successfully treated.
“There is still a gap between Ukraine and high-income countries, and you want to bridge this gap,” she said.
Tabletochki, which is funded by international donors including Choose Love, provides assistance like housing, medicine and psychological support for children with cancer and their families, as well as palliative care support, and also buys equipment and medicine and provides training for health care workers.
There have been some hopeful signs even amid the war, Nogovitsyna said, with an increase in practitioners being trained abroad.
“Education and training can change things more than just renovation and more than medicines,” she said.
But there are new challenges as well. The charity has long relied on crowdfunding donations, but has struggled to raise money within Ukraine during the war, and is seeing higher levels of poverty among families it supports.
And it can no longer reach children in Russian-occupied areas.
“This is the worst thing, because some of the children, they are in palliative status, so they are dying,” she said, and need morphine or other crucial painkillers. “There, we cannot do this. So, children are just dying with pain, and this is very tragic.”
For some children, the war also delayed diagnosis and treatment.
Sasha Batanov, 12, was in a hospital in Kharkiv, bedridden with severe back pain, in February 2022 when the Russian invasion began and the hospital was evacuated. He was taken home, and sheltered there for weeks.
“I was trying to calm him down,” his mother, Nataliia Batanova, said. “Although I realized something was going on.”
They didn’t know it yet, but Sasha had leukemia. If he could have stayed in the hospital, it would have been caught sooner, his mother said.
It would be July before the cancer was diagnosed and he was transferred to Kyiv for chemotherapy. Sasha also needed a bone-marrow transplant, which he received this April. - The New York Times
The writer is an international correspondent for NYT based in London
Oman Observer is now on the WhatsApp channel. Click here
